Tuesday, December 27, 2011

My heart hurts for orphans. From the time I knew about adoption, I knew I wanted to adopt a child. Early in our marriage, Shawn and I discussed adopting a child with Down syndrome some day. When we had Eon, I thought God had just been preparing us for him. Now, we believe Eon is, in fact, preparing us for someone else.

Upon the birth of our first born, I remember thinking, "They could've handed me any baby and I know I would love her just as much." And, later thinking, "That was a bizarre thought to have." :) But I knew then that I was capable of loving one born to another.

So, it's really no surprise that the children of Reece's Rainbow have captured my heart and turned me into an advocate with my first click to the website. I have spent much time praying, crying, and longing over the children listed there. I follow the blogs of parents working to bring their children home. I rejoice when I read the "Gotcha" posts and feel like I'm walking on air after viewing the pictures of the first meeting. I talk about the fate of those not chosen with anyone who will listen...and sometimes even if they won't.

But, God, in His mercy, intervened and radically changed our circumstances. Suddenly, we qualify. We could actually do what just months ago seemed so much like a pipe dream. We could actually have a "Gotcha Day" of our own.

How in the world do you choose a child? I scroll through the pictures and my heart is captivated by each and every one. God chose the children currently in our home. For the most part, we even left the timing and the number up to Him. So, being in the driver's seat is something new.

Yet, we're not really in the driver's seat, are we? Honestly, if we were, I'd be researching our next vacation spot instead of researching the best agencies. But God has so strongly placed this on our hearts, there really isn't any question as to if we'll take the leap.

The rational (maybe secular?) side of me, insists that we wait until the time is right, the money is there, the house is bigger, the baby's older, the littles are potty trained, the olders are enthusiastically supportive, etc.

My heart, however, tells me there is a child who goes to bed at night without a story, a kiss, or a prayer...a child who wakes at night without crying because he knows there is no one to comfort him...a child who has never felt like he mattered (because, in his country, he doesn't)...a child who's fate is sealed when he reaches the age of five and who will surely die unless I can get my head in the game.

When I listen to my heart, my excuses fly out the window. I know a sense of urgency to bring that child home, before any more harm is done.

Sunday, November 20, 2011

(For those looking for an update: Eon's EEG is scheduled for Wednesday morning. We have not witnessed anymore seizure activity. We'll keep you posted.)

Today, I am incredibly grateful to be Simeon's mom. I'm lying on my bed typing on my laptop and Eon is in the tv room right outside mine. He's playing ball with his big brother, Ben. His pants are falling off and his diaper is sagging, giving him a plumber's crack.

Any second, he's going to catch sight of me and run in here signing, "diaper" so I'll change it. While in here, he'll invariable sneak a drink of my coke (and cough...he's still not supposed to have thin liquids) and throw a book at me so I'll read to him.

This morning, he raced into church ahead of me and took off toward the stairs to go to his class. He was indignant when I steered him to the bathroom to wash breakfast off his face, instead. He kept signing, "play, play!" Big sister dropped him off at his class. She later told me that he walked up to the gate and said, "Hiiiiiiii!" and signed, "Play!" to a little boy who was waiting there, then lifted his arms to be carried over the gate and into the classroom. Once inside, he gave a backward wave to big sis and joined in the fun.

I was thinking earlier how empty my life would've been had I chosen differently and terminated my pregnancy for Down syndrome.

Every year, on my due date, there would be tears, sadness, and even guilt. Now, there's cake, candles, presents, and laughter.

If someone with Down syndrome crossed my path, I would inwardly cringe, even as I watched, wondering if they'd confirm my choice by behavior or need. Now, there's an instant delight and immediate connection as we compare notes on our similar trails.

I might feel some measure of relief, along with my pangs of grief, from time to time that my life is not as difficult as I was sure that it would be, but I also would never know what I do now...that courage grows from meeting challenges, that depth comes from embracing hard things, and that love really does conquer all.

He's a miracle, this child of mine. In spite of all odds, he's not only here, he's thriving. He's teaching me what living really means. He's leading me in my quest to discover one thousand gifts, of which he's certainly one.

Without him, my life would have less color. I imagine the winters a little colder and the edges a little harder. The highs of life would be less high and the lows would last longer. There would be less laughter, less passion, less grace...less life.

And I would never know.

What a gift he is to me, this exuberant bundle of designer genes! I am so humbled that God gave me the eyes to see beyond the fear. How I pray that others will see, as well.

Monday, November 14, 2011

Saturday, after having donuts in honor of our bookends' birthdays (Michaela, our oldest, turned 15, and Keturah, our youngest, turned one), Eon suddenly started crying and grabbing his belly while rolling around in obvious pain. We tried everything to calm him and to discover what the problem was, to no avail.

After a half hour of this, we called the doctor on call and left a message for the nurse. Before she returned our call, he calmed somewhat. Then, while he was laying on our bed, his eyes half-way closed, his eyes started flitting from side to side. I called his name and he didn't respond. When I called him louder, his eyes opened wider and stilled, but didn't focus. Then they half closed and flitted some more. The whole thing probably lasted 30 seconds or so. When the nurse called and I explained what happened, she sent us to the ER. Eon was completely exhausted by then and didn't even move when Shawn buckled him into the van. Pulling into the ER parking lot, I thought he looked pale and I couldn't get him to wake up. I shook his leg and patted him and called his name loudly. Nothing. Freaked out, I pulled into the nearest parking spot, yanked him from his car seat and took off running.

Halfway to the door he said, "Momma. Down!" After that, he acted totally normal. He was diagnosed with an ear infection. I tried to hold him down for a CT scan. That was fun. They were able to get enough to rule out hydrocephalus and a brain tumor, anyway.We were instructed to have our pediatrician order an EEG and follow-up with a pediatric neurologist. We have an appointment with our ped tomorrow morning.

Honestly, I'm a little stressed about it all. I was very afraid on the way to the ER. Also, I'm in a lot of physical pain. I hurt my back dashing into the hospital with a 30 pound bundle of low muscle tone. I just recently recovered from a back injury that happened over 3 months ago. I have some thoughts about this new injury that I haven't sorted out, yet. I'll keep you posted.

Saturday, October 22, 2011

Just thought I'd share some recent cuteness. This kid is such a perfect part of our family!The first one is at the pumpkin patch. Eon's not real sure he likes the goats. Maybe because the turkey just pecked at him?

Brotherly love. Or would this be "smotherly love"?He really does love his baby sister. Most of the time, she loves him back.

Can't resist showing off some KJ cuteness. She is really quite adorable. :)

All the siblings after a long afternoon searching for the perfect pumpkin.

Bye! (This is the look we usually get before he takes off like a shot toward the nearest busy street. Thank you to his PT for spending all those hours teaching him how to run. Really.)

Monday, October 17, 2011

Recently, Shawn and I made the decision to switch roles on a more permanent basis. Meaning, I am now working full-time and he is staying home and schooling the kids. You can read more about all ofthat on my other blog.What it means for this one is that adoption may not be out of reach anymore.

I'm scared.It's one thing to have noble ideals; it's a whole 'nother ball of wax to walk them out, or even to take the first step. When it was just a distant dream, I thought and prayed about it all the time. Now that it could actually happen, I find myself avoiding the conversation with God and with my husband. I'm afraid of what they might say...positively or negatively.

The what ifs are looming large:What if we commit to a child and then can't raise the money? What if our friends think we're presumptuous to ask for help? What if we're not organized enough to pull off the mountain of paperwork this would require? What if we don't pass our home study? What if our oldest never gets on board and it rips our family apart? What if the child has undisclosed medical issues we can't handle? What if he has autism? What if we never come to love him as our own? What if something happens to one of us and the other is left to do this alone? What if our biological kids resent us for this? What if they feel burdened instead of blessed?

The hows are close behind:

How on earth can we handle another child, when we're so often exasperated by the ones we have? How will we cope with the additional noise when it's overwhelming as is? How can we possibly afford this? How will we have time to fundraise when we can't even find the time to make Buddy Walk t-shirts? How can we take time out to bond with one child, while still meeting the needs of seven?

All of those questions are overshadowed by one more:

How can I not obey when God has so clearly directed?

How, indeed.

Rescue those who are unjustly sentenced to death; don't stand back and let them die. Don't try to avoid responsibility by saying you didn't know about it. For God knows all hearts, and he sees you. He keeps watch over your soul, and he knows you knew! And he will judge all people according to what they have done. Proverbs 24:11-12 (NLT)

Sunday, October 2, 2011

I have long encouraged women waiting for amnio results to get educated. I know from experience that, unless you are already holding your sweet baby, Down syndrome can become a monster in your mind.

What I didn't realize is that it can become that monster no matter how educated you are.I've been working full-time for the first time in years. Lately, I've worried about Eon, his future, and his delays more than I ever have.

In trying to figure out why, I realized that I haven't spent much time with him. When I walk in the door, he enthusiastically says, "Hiiiiii!" and then hugs me. He follows me upstairs where his baby sister is waiting to nurse. I sit on the bed to nurse her and he climbs up there, too. After hearing me chide him to be, "Gentle!" or, "Don't sit on her!" too many times, he wanders off to do his own thing. By the time I'm done nursing, I have another hundred things to do and Eon's busy with something else. Everyone else in the family comes to me when they want attention (repeatedly. :) Eon doesn't come back.

I finally realized that I need to seek him out to spend time with him. The more time I spend with him, the less worried I am about Down syndrome. Eon's just Eon...perfect the way he is. No monsters here.

Wednesday, September 14, 2011

Ever have a smooth day when all of the sudden, out of left field, comes something you were completely unprepared for?

We had one of those rare days where we weren't completely swamped with patients and could actually leave the building for a real lunch break, today. Most of us took advantage of that fact.

As it often does, conversation turned to marriage and family, with the single gals fielding questions about marriage and the married gals fielding questions about children. Only 2 of us in the group actually have children. We weren't fielding questions at all. ;)

The conversation took a turn and left me feeling as if I'd been sucker-punched.

One of the single gals declared, "I just want to have a child before I'm 35." She was asked, "Why 35?" and my stomach started to churn a bit.

I knew what was coming.

"No offense, Tara, but I don't want a Down's baby."

Rationally, I understand where she's coming from. She's young and is lacking the experience to see that life is not so easily controlled. She has no children and doesn't yet understand that all children have special needs. She doesn't have the spiritual wisdom to know that children are a gift, not a right, no matter how many chromosomes they sport.

Emotionally, I was a bit undone. I know what she said, but I heard, "I don't want a child like yours. He's not good enough. I will avoid one like him at all costs." My momma bear instincts were rising up and I'm afraid I was rather snarky in my response.

"You do know," I said pointedly, "that 80% of babies with Down syndrome are born to women under the age of 35, right?" She did not. The rest of the conversation is a little fuzzy as I tried to get control of my emotions.

Eon is not a mistake. He isn't a tragic accident. He is not a statistic to be avoided, or worse, a problem to be terminated.He was born in the image of an Almighty God who chose for him to be here. He is a gift. I am blessed to be his mom!

Honestly, it is harder (in some ways) to parent a child with Down syndrome. I'm sure even more complications will arise with age.

But, I wonder...how many difficulties are a true result of the extra 21st chromosome, and how many are simply a result of our culture? If ignorance, discrimination, self-absorption, and a general sense of entitlement were not part of our societal norm, would it be easier to raise a child with special needs? I think it would.

My life would be easier if I didn't feel like I had to defend my child's very right to exist. If I didn't feel like I had to prove to everyone how very worthy he is of acceptance, I could relax and enjoy him. My life would be cake if I didn't have to counteract basic ignorance of Down syndrome that I encounter almost daily (Ex, this week alone: Ds is caused by vaccines, only women over 35 have babies with Ds, "they're all so happy," "most of them can't talk," "you can teach them to read?", etc.).

The only frustration I have currently that is actually related to an extra copy of the 21st chromosome, is that Eon can't yet verbally communicate with us and I am certain that he one day will. (He's only 2 1/2.)

I wish that she could truly see how this child has my heart. How he has enriched my life in ways the "typical" children cannot. How he embraces life and expects us to do the same. How he is so very much like his typical peers and his differences only enhance him; they do not define him.

Saturday, September 10, 2011

Lately, I've been struggling with Down syndrome. At 2 1/2, Eon has rockin' gross motor skills and does pretty well with self-feeding and other fine motor tasks. Speech, however, is a whole 'nother ball of wax.

He used to have words. Up to fifteen, in fact. I don't know where they go, but they're gone. We no longer hear, "gallup, gallup, gallup" when he wants up or "goggie" when he sees the family pet. We don't hear "ook" when he wants to be read to. Those words are just gone and they've not been replaced. He continues to sign and adds to his signing vocabulary almost daily, but he doesn't attempt to speak. He seems lost when asked to imitate sounds or words, too. It breaks my heart. There are so many choices and ideas when it comes to speech. So many things to try and so little time. I don't know where to put our focus because no one has done any research into best speech practices for our kids. What if we waste our time pursuing something that won't help and ignore something that will? I'm looking into prompt therapy, sight reading, augmentative communication, or stopping signing altogether in hopes it will encourage spoken words.

What he does do when he's excited, frustrated, bored, hungry, feeling left out, or any other emotion is yell, "MOOOOOOOOW!" often repeatedly. Shushing him doesn't help. Whispering back doesn't make him stop. Telling him a firm, "NO" doesn't work, either. Honestly, it sounds a lot like a large, distressed cow. And it makes me cringe. He sounds very much like a person with special needs.

My reaction reveals a lot about me. It uncovers a boat load of pride and prejudice which have nothing to do with the classic novel. I'm embarrassed that my son makes noises that draw attention to him and the rest of us. I'm ashamed that I'm embarrassed. I'm frustrated because I don't know how to make him stop. I'm mortified that it reveals a prejudice about me. Why is it so important to me that he sound "normal"? Why do the looks of pity or irritation that we receive bother me so much? How can I expect other people to accept him, when I'm struggling to accept him, myself?

And then it occurs to me. I have had the occasion to parent a 2 year-old five other times. They have all been really good at being two. I have not enjoyed my outings with them. Their behavior was obnoxious and often mortifying. They were unpredictable and made me question my parenting skills. They caused people to stare with their tantrums. I received looks of pity and irritation. I was embarrassed.

Why should my experience with Eon be any different? Have I bought into the myth that people with Down syndrome are all "so happy"? Or did he just spoil me by being such a good baby? Why do I insist on making everything about Down syndrome?

Sunday, August 7, 2011

Tali, 7, spent the evening playing with Eon until he had to go to bed. Then she picked up her baby sister and said, "You don't have Down syndrome, but that's okay. You're still cute!"...as if she was consoling her. She also informed me that I should have another baby because she needs a sister with Down syndrome, too. :-)

These moments bless me. I love it when my kids seek out Eon to play with or just be with. They truly love him, which I knew they would, but they also like him. He is enriching their lives. He is very much included in this family.

The bigger boys (6 & 4) have yet to really see him as different. They ask me occasionally why he can't talk, yet, and know that he has Down syndrome and gets therapy, but it doesn't change how they interact with him. He is always in on the action whether they are building tracks in their room or sliding down the stairs in totes.

Tali obviously knows he has Down syndrome. She finds it delightful! She loves to mother him and teach him new signs. He's her favorite hide and seek partner, too. If it were up to her, we'd have a dozen kids with Ds.

Ellie, 11, has a better understanding of it. She adores Eon and is very protective of him. She gets excited when he masters a skill he's been working on and gets frustrated for him when he struggles. She has developed a love for all people with Down syndrome and is very comfortable around people with any disability. She asks the most questions and is, therefore, the most knowledgeable about it. She stands by her statement made when he was weeks old that she will take care of him when we're gone.

Mick is 14 and at the age where different is not a good thing. Yet, she is very practical and has a strong personality. At a time in her life where she could be ashamed of her brother and want to hide him, I watch her reach down to pick him up while talking with her friends. At the grocery store, when he loudly vocalizes, I see her shush him and then tickle his belly just to hear him laugh. When he kicks up a fuss at nap time, she often asks, "Can he please just stay up? He can watch tv with me." And then I watch as she settles him on her lap and turns on his favorite show.

Keturah, almost 9 mos, will never know a life without Down syndrome as part of it. She just knows Eon as the big brother who used to steal and throw her pacifier, but now just kisses her and brings her toys.

My children amaze me. They have taken the changes to our life in stride. They accept Eon for Eon, mildly curious about the things that make him different, but fully embracing the ways he is the same.

Tuesday, July 26, 2011

Soon, (if it hasn't happened, yet) he will be transferred to the mental institute. His head will be shaved and he will likely be tied to a crib. When he cries (and he will, at first, until he learns it won't do any good), he will be ignored or abused. He will sit for hours in his own waste with no stimulation and nothing to do.

Given a family, he could thrive! We've seen it happen time and time again. These kids do very well when given a chance.Please share this. Post it on Facebook, tweet it, blog it, tell people irl, send emails, etc. Please, let's find Harlen a home!

Friday, July 22, 2011

Today is $5 Friday for Harlen. Can you spare just $5 measly dollars for a boy who has no one? Maybe you think, "$5 is just a drop in the bucket. It's really nothing compared to the need." You're right. It's not. But a bucket is simply filled with lots of drops. If enough people just take the time and a little bit of cash, soon the bucket will be full.

So, go ahead. Be a drop in the bucket for Harlen! This little guy will soon be transferred to a mental institution. There, he will likely face abuse and neglect that will kill him. Rescue those who are unjustly sentenced to death; don't stand back and let them die. Don't try to avoid responsibility by saying you didn't know about it. For God knows all hearts, and he sees you. He keeps watch over your soul, and he knows you knew! And he will judge all people according to what they have done. Proverbs 24:11-12 (NLT)

Sorry, but now you know. There is a little boy in a far off land who is headed for death. He is innocent and there is something you can do to save him. God knows you know.

$5 is not much, but it can be everything for this child!

Please give here, today, right now, before you forget! (And share this on Facebook, Twitter, your blog, wherever you can think to.)

Saturday, July 16, 2011

You are a little boy with an extra chromosome. Because of it, you have neither a mom or dad, siblings, grandparents, or a church family. You have no toys, clothes, or even shoes that are yours alone. You have blond hair and blue eyes. You are five-years-old.

That is the sum total of what I know about you.

I don't know what makes you smile or if you ever laugh so hard your belly shakes. I don't know what comforts you when you're sick. I don't know if you dance when music plays or if you wave your hands like your directing the choir. I don't know what your favorite food is or if you like the color red.

I do know that I have failed you. My heart aches over my failure and I've lived in a haze of guilt for several months because of it. I do know that my guilt in no way compares to the misery of what's in store for you as you transfer (or have already transferred) to the mental institute.

I agreed to be a 5-5-5 Warrior for you, to advocate for you, and raise money for your adoption, to tell the world about your fate and maybe even find you a family.

I am a coward.

I wish I could say that I got busy or forgot. Even those lame excuses would be better than the truth.

The truth, dear boy, is that I am a coward. I was afraid of so many things. I was afraid that people were sick of hearing me go on and on about orphans. I was afraid that people would think I was only friends with them because I wanted their help. I was afraid people wouldn't care.

But mostly I was afraid I would care too much. It hurts to love an orphan. It hurts to allow my heart to be broken over things I can't control. It's hard to have one part of my heart in an unknown land and still deal with the here and now.

The reality that I can't protect you is hard for me to take. The harshness of your world is hard to reconcile with the ease of my own.

Added to that is my own foolish pride which knows that I'm not creative enough, persistent enough, or eloquent enough to move others to give with their hearts, to feel your plight, and to tell their friends. I couldn't do it perfectly, so I settled for not at all.

I am so sorry. I am weeping as I write this. The middle-aged mom of many from the rich country of America, ashamed to confess her failings to the poor orphan of Eastern Europe.

It is my hope that one day you will hear these words. I hope that you will sit on the lap of a woman who smells like lavender soap and calls herself "mom" and she will whisper these words to let you know that someone, in her own warped way, really cared about you when you were all alone.

I also hope that others who read these words will care and give and act to get you here.

I am not afraid, anymore, sweet boy. I know that you are not really alone. The same Jesus who is here with me is there with you. He will not give either of us more than we can bear with His help. He will give me the strength to fight for you and you the strength to hold on until someone comes for you. He will hold me as I love you from afar, and hold you as you wait.

Be strong, little one.Love,Tara (If you would like to donate for Harlen, in spite of my failings, I would be so very grateful. Every little bit helps. Please go here to give.)

Wednesday, July 13, 2011

We recently counted up Eon's consistent signs and found there are about 40 that he uses regularly. Most of them are close approximations and some are so similar to each other that we have to pay attention to context (apple and candy, or bug and bird, for examples.) I continue to be amazed by how well he communicates with facial expressions alone, though. Those big blue eyes communicate volumes!

We went to the Down syndrome Indiana picnic last weekend and really had a good time. It's fun to connect with other families and see all the kids. Of course, I can't seem to stop myself from comparing him to other kids with Ds. Seems he's doing really well, especially gross motor wise, thanks to the wonder PT, Jill. She works with him at the playground, frequently, and now he's convinced there is nothing he can't do. Which is great...and scary! It is VBS week at church this week and for us, it's a family affair. The big girls are assistant leaders, Shawn does sound, and I work the nursery while the middles all participate. I enjoyed learning a bit about Eon last night. He is so comfortable with his brothers that he tends to be a little "in your face" with other kids. He was trying to play with a little boy about his age and he started off by tickling him. The other kid was having none of it, and I encouraged him to back off a bit. Then, he tapped the other kid and ran away, wanting to be chased. Other kid was still intimidated by this. Finally, he found a roll of duck tape and threw it, then chased it. Other kid watched for awhile and joined in and they played together.

At first, I was cringing that Eon was scaring the kid. It was obvious the boy didn't know what to do with this odd kid who doesn't speak his language. But, then I was happy that Eon seemed to sense that and adjusted his approach. He certainly isn't one to be ignored!

I also realized how nice it is that, for the most part, I am perfectly comfortable with how everyone loves and interacts with him at church. He is accepted just how he is and I hope that will always be a safe place for him and us. There are a few exceptions. There is one gentleman who means well, but I always get the vibe that he has to "try" to interact with Eon. He'll pat him on the head and say nice things, but I get the impression he's thinking he's such a great guy because he was nice to the disabled kid. Do you know what I mean? Kind of like prejudiced people who say, "Some of my best friends are black"?Have I mentioned that I'm a little overly sensitive? :)

Wednesday, June 22, 2011

You can find the beginning of this post here. No one can truly appreciate another's life experience. Who should decide whose life is valuable?

The Angelina Jolies of the world - with their excessive wealth, nanny for every child, globe trotting lifestyle, etc - might consider my life to have less value than theirs. We work hard for every dime we bring in (and by "we", I mean Shawn because he certainly works harder than me. And brings in more dimes.:) We have a small, starter home...that we've lived in for 13 years and have squeezed seven children into. We are raising these kids without outside help, nor do we have a housekeeper, a driver, or a chef. We drive vehicles that are over 10 years old. If the fuel pump goes out in the mini-van, we just don't drive it until we can afford to get another. Our vacations consist of camping in nearby parks in our tiny little camper...that leaks.

But our reality is so much MORE! We have love and laughter (daily). We have great friends and actually enjoy the work or our hands. Our children are a blessing (all of them) and we delight in them! While I prefer 5-star resorts, gourmet coffee, and theatre performances, I've learn to LOVE camping, McDonald's ice cream cones, and the $1 movie. :) My life is full and rich, even though, at times, suffering has been a part of it. (Who has never suffered?)

Wouldn't have been a shame if the Angelina Jolies got to decide my fate based on the first description?

Just because Eon will never father a child, might not marry, go to college, hold a job, etc., does not mean that he will suffer. Just because his life will not be like mine, doesn't mean he shouldn't have one.

How did we come to this - where we can project our hopes for our own lives onto our children to the point that, if they can't meet them, we decide that they must die?!?

We give women, in their darkest hour, a list of all the possible health issues their child might face and ask them to make a heart wrenching choice. They are supposed to take a gamble on what kind of life their baby might have based on a list. It breaks my heart.

The list never told me that my child with Down syndrome would:
* make me laugh every single day
* eat with gusto everything his momma cooks
* learn to use sign language
* wrestle with his brothers
* be everybody's favorite sibling
* be such a great problem solver
* introduce us to so many wonderful people
* love music, Blue's Clues, and pizza
* have a smile that lights up the room
* be so active (and fast!)
* have so few health issues
* charm everyone he meets

No list of diagnoses and potential problems could EVER accurately describe the life of a person! I don't know what the answer is. I do know that education and advocacy help. So does prayer. I'll continue to do both. I hope you will, too.

Sunday, June 12, 2011

Someone recently asked me what having a child with Down syndrome was really like. She freely admitted that when they were considering having kids, they stated they would terminate if found to be carrying a baby with Ds. She did clarify that, after having kids, she is appalled at having had that thought.

When people ask me about Eon, I often don't know how to describe my feelings toward him. I certainly don't want to present the idea that I love him more than the other kids. I don't. Yet, there is something special/different about my feelings toward him. My friend, Mary Grace, sums it up perfectly in describing her relationship with her own child with special needs. "He has my heart in a way the others don't need to," she says.

Exactly.

I'm sad that the world is sold a bill of goods when it comes to special kids. I've heard women say that they couldn't handle parenting a child with special needs because of finances, lack of support, or because their life was already too complicated.

These poor women will never know what they are made of. They will always see themselves as weak or as victims. They will never experience the joy of plunging in and learning the water is neither as deep nor as scary as they once thought. They will never come to the realization that, while sometimes the water is murky, there are moments of great clarity and supreme beauty. They will only know that they ran from fear. And a small piece of them will die, too.

It makes me sad.

Currently, Down syndrome is diagnosed during pregnancy one of two ways: CVS or amniocentesis. Both tests are invasive and both carry a significant risk of miscarriage. There are screenings that are done through a blood test, but they only convey odds of T21 and are incredibly unreliable. The only way to know for sure is to have the invasive testing or wait until birth.
Until now.

All of my friends in the Ds community already know about this, but a new prenatal test for Down syndrome has been introduced in Great Britain. It is a simple blood test given around the 12th week of pregnancy. It is reported to be about 99% accurate in predicting Down syndrome in utero. It should be available in the US by April of next year.

I find this terrifying.Currently, there is a 90% termination rate for confirmed Down syndrome pregnancies. Keeping in mind there are many women like me who know they have increased odds, but refuse the testing, this number is still unbelievably high. Many, many women are simply surprised at birth to discover their new baby has Ds. They either declined the screenings, or the screenings showed they were at low risk.

What will happen when testing for Down syndrome becomes routine and women discover, perhaps before they've even announced their pregnancies, that they are carrying a baby with Down syndrome? I'll tell you. They will abort in ever increasing numbers. The number of babies with Down syndrome born each year will drop dramatically.

It breaks my heart.

These babies are being targeted for termination. Don't let anyone tell you that this testing is to help expectant parents to prepare. That is a wonderful side benefit for those who choose to carry to term. But that is not the intent of this test. It's just not.

I've heard too many stories of my friends with a prenatal diagnosis (and many with just increased odds) being pressured to terminate. I've read too many comments on articles about this, denouncing the "cost to society" those with Down syndrome represent. (Lest you think I'm being dramatic, I calculated the ratio of positive to negative comments about Ds on a mainstream article. It was around 1:8...for every one positive comment, there were eight negative ones, usually focused on "suffering" and "burden".

Saturday, June 11, 2011

I spoke of our concerns about Keturah in my last post. I'm happy to report that her echo came back normal and she appears to be gaining some weight from the supplementation. Yay! Our follow-up visit is on the 22nd, so we'll see where we go from there.

Eon is doing great! He is 2 years and 4 months, now. He is so typical in some ways...asserting his independence, throwing the occasional tantrum, running away when called, hiding when eating stolen candy, wrestling his brothers, pretending to "die" when shot with a toy gun, etc. In some ways, Down syndrome seems more apparent than ever before. We are working hard on "inside voice" as he vocalizes loudly in public sometimes and I cringe. He's responding well to that, and will quiet down when I remind him (unless he's tired or hungry).

He is starting to really imitate more and more signs and we are even seeing him request things not given as a choice. For example, I asked him if he wanted to watch Barney or Blue's Clues. He thought for a minute and signed, "Signing Time". I didn't even know he could do that one! The other day, he heard the door slam and thought it was Shawn. He signed/said, "dada?" I told him that Daddy wasn't home and he signed, "Where?"

He seems to have trouble with the motor planning involved in signs and some issues with proprioception (knowing where his body is in space). Sometimes he'll attempt a sign and do it on the wrong part of his body, or make it look just like another sign when he clearly means the new one. Also, lol, he can't pick his nose. :) He will put his finger up there, then has to move it around to even find his nose, let alone the nostril, and by that time, I've put a stop to his intentions. Cracks me up!

We are adding OT back into the mix in hopes of helping him with these issues. (well, not the nose picking. LOL!) Gross motor-wise, the kid has got it going on. He has some mad sliding skills. I was so impressed at our first outing to the park and he was able to climb right up to the slide, turn himself around and shimmy down, and then exit the slide to do it again...completely by himself! He's also learning to run and jump in PT. Even without full-on running, that kid is fast!

His receptive language skills are really good. He seems to know what we are saying, even when we wish he didn't. The kids like to quiz him. For example, they'll say random words and then throw in a food item. He'll say, "Mmmmm" every time he hears a food choice, even if it's something we rarely have! He also has very keen ears for the words "nap" and "quiet time" and will immediately start fussing if we utter them. :)

Here's a pic from a Babycenter.com meet-up. Eon had a wonderful time hanging with the princesses! :)

Saturday, May 21, 2011

So the last few years have been something. We had Eon and the diagnosis of Down syndrome and all the appointments/specialists associated with that. Then he had a vascular ring repair. We've also had one child diagnosed with anxiety disorder after baffling behavioral issues and another started medication for long-diagnosed ADHD. I had a kidney stone in pregnancy, and after, with resulting hospitalization and lithotripsy.

It should not have come as a surprise, then, to discover that there may be a problem with our littlest peanut, Keturah (KJ). She has been a slow grower from the beginning. She weighed 7lb, 11oz at birth, but was slow to put on the ounces and was just over 10lbs at 4 months. I was concerned; the doctor was not. She was plotting on the chart in a regular way and there was no cause for alarm.

Until Thursday, at her well-baby 6-month check, when she had gained only 2 ounces. Suddenly, her weight was no longer even on the chart and we were discussing failure to thrive work-ups. We decided to supplement for a month and reassess. Until he heard her heart and detected a murmur. "Have I heard a murmur on her before?" he asked. Nope. And he scheduled her for an echo-cardiogram.

I took it all in stride. In my Down syndrome world, echos, heart issues, and supplementation are all the norm. I am comfortable discussing these things. Only, this is not my hearty kid with Down syndrome. This is my tiny, delicate princess with the typical number of chromosomes. And I am terrified.

In retrospect, I can see so many signs for concern. She has always been "my putziest nurser" I've often said. She takes forever to finish feeding and usually falls asleep long before she's done. She sweats more than the others did. I can see her freakin' ribs when I change her diaper. (DUH!)

So now we wait, with Dr. Google close at hand and all the terrifying possibilities.

I find myself worrying and fretting.

Have I learned nothing over the past two years?!? God's got this. This does not take Him by surprise. Worrying doesn't do any good and cannot change the outcome of any situation. In fact, my life verse is Psalm 37:8b, "Do not fret - it only causes harm." (Other people get really cool life verses. God is very practical with me. :)

God loves my little princess even more than I do. He has a plan for her life, as He does mine. His grace is sufficient for me.

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. Phillipians 4:6

Saturday, May 7, 2011

Sunday, April 24, 2011

People that we are close to expressed their displeasure recently at our desire to adopt. "Don't you think you have enough kids?!"

This would be my response if I thought they would hear me:

It's not about a desire to have more kids. We have seven. By most people's standards, that's a lot. Often, we even think it's a lot, but usually, it just seems normal. We are imperfect people and an imperfect family. There are times when I think we've got it goin' on...and times when I feel like we're the Beverly Hillbillies. But when I look closely, I can see God's design.

There are an estimated 147 million orphans in the world, today. That number is too big to wrap my brain around, so I look at individual children that I'm aware of that have nobody. I look at the pictures on Reece's Rainbow and imagine what those kids are like. Who delights in them? Who encourages and challenges them? Who loves them?

No one.

I imagine them living the life they've always known, in the same groupa with the same caregivers, playing with the same toys (if there are any), looking at the same walls...when, suddenly, at the age of five, they are jerked from that environment...ripped away from all they've ever known...and taken to a dark and scary place. There, they are tied to a bed or crib and left alone. I imagine their tears (which are ignored) and the noises which leave them terrified. Screams, moans, cries, and profanity assault their innocent ears. Most of them die within the first year.

And I think of my children.

If you asked them, they would tell you they have a rough life. They don't have the electronic gadgets many of their friends do. They are forced to share a room with siblings. Most of their clothing is second-hand. I lose my patience and yell, sometimes. (Okay, maybe a lot). They are required to do chores and take care of each other. Their younger siblings break their stuff.

They are blessed.

Quite simply, we believe we have something to offer the orphan. A small home, an imperfect family, siblings to play and fight with, parents to delight in them (and yell at them, from time to time), and the love of their Heavenly Father.

We are under no illusion that it will be easy. We don't expect our future children to show us any gratitude for being rescued any more than our current children do for not having to be. Children are generally selfish, messy, loud, and exhausting. Kids who were raised in orphanages come with emotional baggage, usually expressed behaviorally. Parenting is seldom easy, no matter where you get your kids.

Do we have unrealistic expectations about what it will be like? I'm certain that we do. We sure did when we were expecting our first, when we added a second, and when we set out to have a large family. No one can adequately prepare you for the future. I believe that's where grace comes in to play. God promises to be our strength in weakness. He tells us that He has given us all we need for life and godliness. He assures us that His grace is sufficient. I imagine it will be. It is now.

I didn't know about the fate of children punished for simply having an extra chromosome before we had Eon. I do now. I cannot pretend I don't. I believe that would grieve the heart of my Father. He is a champion of the weak. "Let the little children come to me," He said. He called caring for orphans "pure and undefiled religion," and He likens caring for "the least of these" as caring for Himself.

"Rescue those who are unjustly sentenced to death; don't stand back and let them die. Don't try to avoid responsibility by saying you didn't know about it. For God knows all hearts, and he sees you. He keeps watch over your soul, and he knows you knew! And he will judge all people according to what they have done." Prov. 24:11, 12 NLT

We are not in a position to adopt, at this time. We don't meet the minimum income requirements for our family size. That's a hard pill for me to swallow, sometimes, but I believe God's timing is perfect. Until then, our hearts are willing. We advocate for orphans and support the adoptions of others. And we pray....oh, how we pray...that the precious children waiting will find their way home.

Tuesday, April 12, 2011

When Eon was born, I received numerous copies of the essay, "Welcome to Holland." Although, I didn't agree with everything in it at the time, I thought it was a good enough analogy for what we were experiencing. I've since learned that some of my fellow moms in the Down syndrome community really loathe that essay and some really love it.

My friend, Patti, recently wrote a blog post about her response to it and where she is now, that made me think about it some more.

Now that I am more than two years into this journey, I feel like I lived in Holland for a little over a year. During that time, I ate, breathed, and slept Down syndrome. I read journal articles, joined support groups, blogged and read blogs, connected with other mommies, and advocated until I was blue in the face. Anything related to Down syndrome was worth my time.

If Holland is the analogy, then I learned the language, wore wooden shoes, and ate dutch food. I did feel like I was navigating the back roads of a foreign land.

Eon is now 2 years and almost 3 months-old. I feel like we emigrated back to Indiana. I enjoyed my time in Holland. I learned so much and connected with some amazing people who will always be part of our lives. I brought home useful and beautiful souvenirs. I still know the language and occasionally cook dutch food and wear my wooden shoes.

But I don't live there, anymore.

Down syndrome is a part of our lives and always will be, but it is no longer front and center. It is not the defining part of who we are.

Eon's needs fit with the needs of the other kids. He needs his juice thickened to prevent aspiration, Ellie needs to take her ADHD medication, Ben needs a schedule to plan for his day, Zak needs reminders to flush the toilet, etc. Everyone's needs are special to them and, because they're my kids, they're special to me.

Eon is a kid with Down syndrome. He is also one of the Lakes' kids. I finally see him as more of the latter, than the former.

I love Holland, but there is just no place like home!

*Back Home Again, In Indiana is our state song, most famously sung by Jim Neighbors (of Gomer Pyle fame) before each Indy 500 Race.

Sunday, March 13, 2011

"I just couldn't let my child suffer."That line is used a lot to justify terminating a pregnancy for Down syndrome. Those of us parenting a child with Down syndrome would be quick to dispel the myth of "suffering" when it comes to our kids.

But, in thinking about the last week, I realized Eon really does suffer, at least in his mind. He suffers every time he gets a flick on the hand for plucking the pacifier out of his baby sister's mouth. He suffers everyday around 2:00 when he is laid down for his afternoon nap. He suffers when his mean old mom hands him a cup of milk and he wanted juice instead, or when she makes him get down when he's standing on the dining room table, or when he walks into the bathroom signing "bath" and no one will give him one. If his response is any indication, he suffers every time someone has the audacity to go against his will.

He's enduring all this suffering, not because he has Down syndrome, but because he's two. And he's really, really good at it.

The dictionary defines "suffer" as: to undergo or feel pain or distress. While most of the above wouldn't qualify as pain, judging from his reaction, there is no small amount of distress.

We, his parents, learned a few kids ago that causing a two-year-old some distress by not letting him get his way all the time will save him (and us) from more severe distress in the future. So, yeah, Eon's going to suffer. We expect him to grow into a mature, responsible adult, just like we do his siblings.

I wonder about those parents who would choose death over suffering for their children. Who has ever escaped pain or distress in this life? Who's to say that escaping them is desirable or the best outcome?

Wednesday, March 9, 2011

This poor, neglected blog. Sigh. It's not just the blog, it's facebook, and babycenter, too. I needed to unplug for awhile to devote my attention to real life stuff. I hate when life gets in the way of my socializing!

February was a rough month for Eon. I'm not sure what was going on with him. He started waking up at night, every night, and was just kind of whiny and demanding. Basically, he acted like a 2yo and he's really good at it! More concerning to me was that he seemed to have gone backwards with communication. He lost most of the signs he was consistently using and almost all of the words he used, too. It was disheartening. Every sign he even attempted to imitate looked exactly like "stop".

In the last few days, he's started sleeping all night, seems more engaged and happy, and more importantly, has begun signing again....imitation and spontaneous! I have no idea what was going on with him, but I feel like he's back and I am beyond blessed!

Saturday, February 12, 2011

I just spent several days in the hospital after my large kidney stone - remember the one from my recent pregnancy? - decided to rear its ugly head.I was sitting in my beginning crochet class on my birthday (gift from my awesome husband) when the familiar pain about took my breath away. I thought it would eventually recede back into the kidney like it did before and was determined to outlast it. I threw in the towel 12 hours later and headed to the ER. Kidney stones hurt!

After receiving pain meds (ahhhhhhh) and a stent to allow for good urine flow, I was sent home. The next day, I awoke with a fever which kept climbing until it was above the "call the office if you develop a fever greater than 101F". Mine was 102.7. They sent me to the ER, where we waited for 3 1/2 hours before being called back to see a doctor. After giving me more pain meds (ahhhhh) and fluids, they decided to admit me.

In 2008, I had similar kidney stone experience. I had a lithotripsy (shock to the kidney to break up the stone), received a terribly uncomfortable stent, and (long story short) ended up in the hospital with candida sepsis and almost died.

The morning after my recent admission, in walks my urologist who cared for me during my last debacle (much of which was the fault of one of his partners). He walked in and said, "I thought it was you! How many kids do you have, now?" And then I remembered: He was just in awe of the fact that we had 5 kids at the time. He talked about it every time he saw me. He could not imagine how we afforded all those kids and how we handled them. He asked tons of questions about it.

When I told him we now have seven, he was, of course, incredulous. He asked the same questions all over again and I laughed. I responded like I always did.

But it made me think.

It's obvious he doesn't know many moms of large families. The few times he's seen me, I've been at my worst, in a medical crisis. I looked awful...exhausted, stressed, sick. I'm sure any other moms of many he sees in his medical practice look the same because of when he sees them.What if he decides from those encounters that moms of many have a poor quality of life and must suffer a great deal? They are exhausted, stressed, and sick. What if, when he saw my husband who looked stressed, as well, he deduced that I'm a burden to my family? I'm now someone who's in and out of the hospital. He's never seen me laugh with my kids, or hang out with my friends, or date my husband, or enjoy my job, or any of the things that make my life great!

Maybe it's a bit far fetched (or maybe not...he was really focused on our large family:), but I'm afraid that's what happens when doctors see children and adults with Down syndrome. They see these folks in a medical crisis and make the leap.They decide that theirs is a life of poor quality. They see the number of hospitalizations or the severity of an illness and decide that patient has a miserable life, as if a medical record can ever adequately describe the life of a person. They never see the patient laughing, loving, living. They never see the in between times. They only see the stress, the sickness, the fear.

Often they assume the negatives must also be true of every other person affected with Ds. Just like my doctor will never see the thousands of healthy moms of many, other specialists will never see the thousands of healthy people with Ds.

So when people with a prenatal Down syndrome diagnosis ask them about quality of life for those with Ds, they answer with their experience, and their opinions formed from their experience. And that's just not accurate.

And it's not good enough.

Thankfully, it's no longer all they have to go on. Lettercase now offers a brochure to medical professionals called Delivering a Down Syndrome Diagnosis. I am told it's excellent and of the highest quality and most accurate information. They plan to deliver them to 10,000 perinatologists, obstetricians, and genetic counselors this year. That will only be a fraction of the number needed to be distributed. It is incredibly expensive to publish and distribute and they could use our help. Please visit the site and consider making a donation or, at least, purchasing a brochure and delivering it to your healthcare professional. If even one woman chose to continue her pregnancy because of it, wouldn't it be worth the cost?

Tuesday, February 1, 2011

A few nights ago, Eon fussed in the middle of the night and would not settle down. After trying a cup and a diaper change, I finally just hauled him into bed with us. I rubbed his back and let him lay on me for awhile. He ended up lying between us sideways (why do kids always end up that way?) with his feet basically in my face. I couldn't sleep. I just laid there thinking how blessed he is to be born in this country, into our family. I couldn't help but think about all the other toddlers who will never be comforted in the middle of the night and who will never know the soft touch of a mother's hand.I've read before that institutionalized babies don't cry. They learn quickly that it does them no good. There is no one to soothe them or meet their needs. A researcher from Harvard Medical School studying Romanian orphans recently divulged that the institutions were "eerily quiet".Some of the adoptive moms have mentioned that they had to teach their children how to be comforted. It was a foreign concept to them.We have to stop thinking that this is someone else's problem, that someone else will meet the need. Because someone isn't. An estimated 147 million orphans do not have anyone to smooth the hair off their foreheads, or rub their backs, or kiss their noses....acts we, as mothers, perform countless times a day.My friend, Patti, though she is unable to adopt at this time, is working to change that for a few kids. Please visit her blog to join her "Pure Love Giveaway". She has lots of great prizes so you can help an orphan and maybe win something. I should know...I read about it on my iPod Touch that I won in her first giveaway! :)

Friday, January 28, 2011

When it comes to emotional topics, I like to write a blog post after I've reached a conclusion, when the emotion is past and I feel I've resolved something within my mind.

But my emotions are running high right now and I feel there is no solution. There will be no tidy package with a neat little bow for this crisis.My heart literally aches over the 92% termination rate for Down syndrome pregnancies. I am burdened for the women who have made the choice to have their young killed out of fear, ignorance, and, yes, selfishness. I am burdened for the lives of children eliminated and tossed away simply for being different than what was expected.

And I am terrified for the many yet to be targeted. A test is coming that will guarantee the almost complete annihilation of a whole class of people. Right now, many women give birth to babies with Down syndrome unaware. They are surprised to discover soon after birth that their child is sporting an extra chromosome. While they are usually shell-shocked initially, love for their child saves the day and they come to learn that life with an extra 21st chromosome is a life worth living. Most eventually discover that they wouldn't change a thing, even if they could.

Soon, a surprise like that will be almost unheard of. A simple, non-invasive, accurate blood test will be available within the year to diagnose Down syndrome during pregnancy. Some women will still choose to continue the pregnancy. Most will not.You may think I am being overly dramatic, but I have heard too many mothers of children with Ds, honestly confess that they are glad they didn't know. They don't know what they would've done had they had a prenatal diagnosis. I have read too many negative comments following news articles about the new test to pretend like it is good for women to have "all the information available to them." And I have read too many stories from women who were pressured to terminate in subtle and blatantly obvious ways from the healthcare professionals treating them, to believe that these women are being given accurate and current information and making informed decisions.

Honestly, I barely see people with Down syndrome in my community as it is now.

I advocate all the time. I spend more time than I should on birth boards, the amniocentesis board, the prenatal testing, and poor prenatal diagnosis boards of Babycenter.com giving accurate information, showing pictures, and sharing snippets of normal life in an effort to dispel some myths and fear surrounding Down syndrome. I blog about our life and our boy. I post articles and facts on Facebook. I take Eon out into the community and "show him off".

I fear it does little good.

I feel like I am standing on the shore with a cup, trying to hold off a tsunami.

There is a tidal wave of ignorance, bigotry, misinformation, deception, convenience, ambivalence, and fear threatening to wipe out people like my son. My cup of truth seems paltry in comparison.